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Should I have surgery?

Fri, 06/17/2011 - 22:06

Hi! All! My doctor is suggesting that I should have surgery. I'm undecided though because about 14yrs ago I was put in the hospital to see if I was a canidate for brain surgery. Except the doctors told me I wasn't because my sz came for different directions of my brain. Now my doctor is thinking that since I have been tested a great deal of yrs ago that I might be a canidate now. I'm afaid to get it done either way, because I'm afraid of what the results might be. What should I do?

Comments

Re: Should I have surgery?

Submitted by tcameron on Sat, 2011-06-18 - 17:05

I'm only a patient and don't know how often you have seizures.  I take 5, yes five AEDs:  Clonazepam, Depakote, Dilantin, Lamictal and Vimpat.  I still get approx 3 to 4 per month.  I refuse to have surgery because there are other options out there.  I'm just as afraid as you.  What type of surgery is your doctor planning on giving you?  The neuropace might be an idea.  It's a pacemaker for the brain.  Is she planning on a lobectomy?  That's scary. 

Then again, I'm only a patient.  You can't undo what has been done.  I'm sure it's probably safe, but ask her what the percentage is for how many patients have strokes as a result of this procedure.  She has to answer your question.   Even the VNS has a 10% stroke rate.  That's 10 out of every 100!  

I'm only a patient and don't know how often you have seizures.  I take 5, yes five AEDs:  Clonazepam, Depakote, Dilantin, Lamictal and Vimpat.  I still get approx 3 to 4 per month.  I refuse to have surgery because there are other options out there.  I'm just as afraid as you.  What type of surgery is your doctor planning on giving you?  The neuropace might be an idea.  It's a pacemaker for the brain.  Is she planning on a lobectomy?  That's scary. 

Then again, I'm only a patient.  You can't undo what has been done.  I'm sure it's probably safe, but ask her what the percentage is for how many patients have strokes as a result of this procedure.  She has to answer your question.   Even the VNS has a 10% stroke rate.  That's 10 out of every 100!  

Re: Should I have surgery?

Submitted by chriswp on Sat, 2011-06-18 - 19:29

 

I'm also a patient and while I've only been diagnosed with seizures for a few months, I know I've had seizures for many years. Mine seem to getting worse, esp over the last few months. I would consider surgery, but only after more than just a few meds were tested. I guess the tricky part is that the longer one waits, the worse it gets, but there's still risks with surgery. Though, with more limited temporal lobe surgery I hear that it's less risky.

Please post on your progress and coming decisions,

 

I'm also a patient and while I've only been diagnosed with seizures for a few months, I know I've had seizures for many years. Mine seem to getting worse, esp over the last few months. I would consider surgery, but only after more than just a few meds were tested. I guess the tricky part is that the longer one waits, the worse it gets, but there's still risks with surgery. Though, with more limited temporal lobe surgery I hear that it's less risky.

Please post on your progress and coming decisions,

Re: Should I have surgery?

Submitted by tcameron on Sat, 2011-06-18 - 21:59
I'd try every AED out there first.  A new one is coming to the market later this year.  If you've only been diagnosed a few months, you've got a long way to go.  I was diagnosed in 1975.  I'll bet you weren't even alive yet.  It wasn't until the early 90's that my seizures were not controlled with AEDs.  I hope you make the correct decision. 

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